Meet Ruth Wekesa Namusia aka Ruwen

She was born on 7 August 1986. Ruth suffers from sickle cell anemia and is a sickle cell advocate with the Sickle Cell Warriors Association of Kenya.

Ruth was raised mostly by her father following the death of her mother in 1989 and was treated as a delicate child in the family due to her condition. Her father taught her to be independent and to manage her sickle cell condition in order to avoid putting her health at risk.

She was a daddy’s daughter and the love and care from her father helped her carry on with life despite the many challenges of growing up as a sick child. She was made to believe that she can live a normal life, go to school and study normally, and take part in simple day-to-day activities.

Sickle cell anemia is a genetic blood disease created by a mutation in the bone marrow that produces deformed and or deflated blood cells. Instead of blood cells being round and full of oxygen, they become hard, sticky and crescent-like. When the deformed cells are stuck in blood vessels, they cause pain referred to as a “sickle cell crisis.” A sickle cell crisis can happen in any part of the body and can become as painful as child labor contractions. A pain crisis can be triggered by dehydration, stress, cold temperature and infections. Sometimes, they are simply unexplainable. The most common description of the pain is a feeling of being stabbed repeatedly. The disease if not managed well, can result to perpetual fatigue, anemia, delayed growth, low immune system, stroke, seizures, organ damages and heart attacks.

Being a sickler, Ruth has faced countless challenges; constant interruptions to life by the repetitive hospital trips, pneumonia bouts and other random health complications. People have judged her harshly! Sometimes when she has been in crisis, she’s misunderstood with some people thinking that she is faking it perhaps to avoid responsibilities. Others, misinformed and superstitious thought that she would not leave past 18 years.

Sickle cell is an invisible disease; people underestimate the level of pain and discomfort sicklers experience. In schools and outside school, hey are told that they are lazy, liars and attention seekers.

Most teachers are unaware or are not sympathetic to the plight of sickling children, sometimes even punishing them for perceived mischievousness. Some adult sicklers been unfairly fired from their jobs for allegedly being not fit to work due to the long absences from work during crises. To make it worse, some doctors and nurses do not know how to handle sicklers as patients leaving them to suffer and die due to negligence. Most sickle cell related deaths are due to crises not being aggressively treated in hospitals, which then leads to acute chest, organ damage, and eventually, organ blockage or failure.

Sickle cell warriors have faced a lot of stigma in the society. But with time they have learnt to be responsible for educating medical staff, caregivers etc. on their disease hoping they will be listened to, understood, and treated with a little more empathy, acceptance and will not be discriminated against.

Ruth has ignored her pain and criticism in order to achieve her dreams and has become a symbol of hope to other warriors fighting for survival. Ruth is living her dream. She has refused to let pain, self-pity and negativity bring her down. She is building her own freelance career in the transcription and translation field. Working with great producers in Kenya to transcribe scripts for programs like Stay, Lion’s Den and Madina’s Dream among others. She is also continues to advocate for sickle cell disease awareness.

Having a chronic illness does not mean that you can’t work hard and contribute to the world. It means that you must do so differently than other people and sometimes through fighting hard.

This is why these are warriors. They have been fighting to live and thrive in the society since birth. And that is not the end; they will continue fighting until society and the whole world will show them some empathy and understanding.

Ruth is doing a good job out there by creating more awearness …. but we have natural suppements from the USA that we currently use, they have worked wonders. No painful crisis for the last 1 year..you could contact Tamika Moseley on face book for more information on Even Flo…. a blind study is also being curried out in Kisumu by Uzima University on the same

Ruth’s great job is being felt everywhere. She is an icon and giving us hope. I wish we can all combine forces so that we can have a great impact.
Yes, I have heard about Tamika however it is prudent to note that that sicklers react differently to medication and what works for you may not work for somebody else. Its is also better to do more research first and consult with your personal doctor before trying other medications.
And again, how many can afford? Cost is another big issue. Most of the sicklers can not afford the basic Folic acid, hydroxyurea and PENVI. How can this be handled first?
Otherwise, I hope with the current research being conducted, we are going to have a cure for sickle cell.

Ruth great work, sicklers are usually misunderstood. I pray that one day the government would recognize the plight of sicklers and provide them the required medication free like the ARV’s, our patients will not be dying on things which can be prevented. The nurses and the teachers should be educated more on how to handle sicklers because most of them are so ignorant about the condition.

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